Eliminating stigma
The stigma of COPD can prevent patients from coming forward. Here are our top insider tips on how you can make the difference.
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How to inspire patients to come forward in discussing COPD
Few chronic illnesses carry a lack of awareness and a stigma like COPD. Caused primarily by tobacco use, COPD can evoke feelings of guilt, shame and regret among patients for their condition, particularly if there is a history of smoking or an inability to quit regardless of diagnosis.1 An increasing societal expectation for people to be responsible for their health can fuel this lack of empathy.
In fact, the stigma of COPD is so ingrained in our consciousness that it also applies to older patients who were not aware of the dangers of smoking decades ago. The stigma of COPD even pertains to the 25% of patients who never smoked and whose disease has been caused by environmental, occupational or genetic factors.1
Contributors
Many patients are not diagnosed until late stages of COPD because they were ashamed to talk to their
doctors about symptoms that they brought upon themselves.”
Krystal Craddock, BSRC, RRT-NPS, AE-C, CCM
COPD Case Manager UCal Davis
Those with COPD may also experience stigma within the healthcare system. This can be especially damaging, as studies show that a lack of understanding and trust from health personnel can negatively affect the lives of people with COPD. As a result, those living with COPD are often afraid to discuss symptoms with their primary care physicians, ask questions or seek more information or treatment. This directly prevents early diagnosis and treatment, which can have a devastating effect on the patient’s prognosis and management of the disease.
Help patients stand up to the stigma of COPD
Helping patients battle this stigma does not happen passively, but with thoughtful action. You can build your skills in this area by supporting patients in three ways: empathy, education and engagement.
Empathy
Clinical empathy, once regarded as “having a good bedside manner,” seemed to be more of a personality trait than an actual skill. Today, studies suggest that empathy is a critical component in building trust between patient and physician.2 One key tactic you can use to support this is empathic listening.
Empathic listening
While you may not have control over the stigma society assigns to patients with COPD, you can shape your own behaviors to help patients feel more comfortable. While you may never intend to present yourself as judgmental or disapproving, doing these things can reinforce your openness to the patients you serve. With subtle cues and actions, you can convey that you are listening intently3:
Focus on the moments when the patient seems to display the most energy: more rapid speech, a change in facial expressions or more pronounced gestures. These signs can provide the clues to what the patient values most. By exercising these empathic listening skills, you’ll dial up your own ability to keep the stigma of COPD out of the treatment setting.
A study in empathy
Studies show that empathy is linked to2:
Education
Education plays a critical role in the diagnosis, treatment and management of COPD—and can help patients come to terms with their disease. According to Roberto Benzo, MD, MSc, it’s important to provide the appropriate information about their condition at every point along the continuum of care. Dr. Benzo explains that patients “should be at the center of everything we do, including how we educate about COPD.” Every member of the care team has important instructions and information for the patient, but the system is such that we are working in silos and that makes it difficult for the patient to absorb and retain all of the information—and it shows.
I can’t tell you how many times we’ve had a patient come into the hospital for a COPD exacerbation and I asked them, "Well, what do you know about COPD? What is COPD?" And they say, "I don’t have COPD. I have emphysema."
Krystal Craddock, BSRC, RRT-NPS, AE-C, CCM
COPD Case Manager, UCal Davis
Managing the patient more holistically is what many COPD insiders believe improves outcomes. Ms. Craddock maintains that when all members of the care team come together on behalf of the patient, listen empathically and provide information most appropriate for the individual patient, you will see more positive results. One potential reason for this lack of understanding is that patients may struggle to retain all the information they receive (which can be a lot). There are times when we assume our patients understood everything we said, often confirmed by nodding.
I think that far too often we underestimate the enormous burden of self-management we place on our COPD patients, expecting them to provide for themselves what is accomplished by an entire care team.”
Chris Landon, MD, FAAP, FCCP, CMD
Director of Pediatrics Ventura County Medical Center
But true retention is not a given. Reinforce their understanding by:
Asking them to repeat back to you the information you gave them
Giving them a written summary of the discussion
Providing relevant literature
As an insider tip, you can even ask them to bring a health buddy. Health buddies can be a friend or caregiver who can accompany patients to their appointments and act as a support system.
Engagement
According to the Center for Advancing Health, and based on the work of J.H. Hibbard and others on patient engagement, one definition of patient engagement states4:
Patient engagement is actions individuals must take to obtain the greatest benefit from the healthcare services available to them.”
Chris Landon, MD, FAAP, FCCP, CMD explains that engaging patients requires that “we understand the context in which people live.” That understanding enables healthcare workers to engage patients where they are in their health journey and on the health learning curve. You can achieve this primarily through empathic listening and motivational interviewing. This approach ensures that the patient is being successfully involved in their own healthcare, which opens doors to care delivery that is actionable and empowering.
Move forward, together
Patients may not feel comfortable discussing their COPD, but you can play a pivotal role in helping them come forward. By developing your skills, you can help improve their quality of care — and life.
Further reading
References 1. McNamee D. How does stigma surrounding COPD affect research and care? Medical News Today. https://www.medicalnewstoday.com/articles/285047.php. Accessed December 22, 2017. 2. Boodman S. Efforts to Instill Empathy Among Doctors Are Paying Dividends. Kaiser Health News. https://khn.org/news/efforts-to-instill-empathy-among-doctors-is-paying-dividends. March 12, 2015. Accessed December 2017. 3. American Medical Association. Listening with Empathy. PowerPoint Presentation. 2015. 4. Center for Advancing Health. What is engagement and why is it important? March 2010.
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